Why I’m not doing the #icebucketchallenge or donating for ALS

Boy fills up buckets with water in Northern Tanzania. (Credit: Tom Murphy)

I was called out for the ice bucket challenge two weeks ago. Until today, I did nothing. In this column, I will try to explain my mixed personal feelings and what I decided to do with my $100.

I have been researching and reporting on the issue of water access for a few years now. Pouring out water does not feel right for me to do because I cannot forget its importance for so many people. I think about the boy seen in the top image who has to fill up dozens of buckets of water to bring home for cooking, bathing and drinking. I think about the muddy water that I had to filter while living in Kenya when the well I was using was running low. I think about the girl who I saw walking past her school with a bucket of water on her head as her classmates returned to learning. I think about the drought that recently stuck the middle of the US and the current drought in California.

Water is too important in my life to waste when there are other alternatives. I say this not in judgement of others actions. I’ll admit it. I still get a good laugh out of seeing family, friends and celebrities dump ice cold water on themselves. The reactions are often hilarious. Despite that I will not be participating in the ice bucket challenge by giving to the ALS Association or taking an ice water shower. Though, I will participate to the extent that I donated $100 elsewhere.

I was initially skeptical, having seen how such campaigns can lead to a rise in social media action, but little else. It was not until I read an article about the challenge a week after videos started appearing on my feed that I learned the challenge had a giving component. I was under the impression that it was only about awareness.

I was wrong. I was also wrong to assume people would not give. More than $90 million has been donated to the ALS Association in less than a month. Last year, the association raised $2.6 million in the period between July 29 and August 26. It is hard to see the ice bucket challenge as anything other than a remarkable success for ALS research. The money going in keeps picking up steam with an average of $9 million donated each day for the past week.

Critics say that the campaign is slacktivism. They are right. They are also right that it is about peer pressure and making a video on social media. Those are also the reasons why the campaign is keeps bringing in money to the ALS Association. Writing off the campaign and demeaning the people who are participating is foolhardy. When all is said and done, some $100 million will have been raised for an obscure disease that affects a small portion of people.

Most people have no connection to ALS and are giving. That is a powerful achievement in fundraising. Even though I recognize all of that, I am not choosing to participate by dumping a bucked of ice and water on my head. I will make a donation, but it will not be to the ALS Association. Below I will explain some of my scattered thoughts on the campaign.

(Credit: Tom Murphy)

Fleeting Awareness

Remember #BringBackOurGirls? First Lady Michelle Obama and thousands of other activists held up signs and used social media to raise awareness about the more than 200 Nigerian schoolgirls who were abducted by Islamist militants. That happened 135 days ago. The girls have yet to return home. Committed advocates continue to to make noise about the problem, but it is an issue that is off the radar for most Americans.

What about #Kony2012? The video about a warlord and the atrocities committed by his followers in central Africa garnered more than 100 million views in a matter of days. News reports covered the short film, a backlash followed and people forgot about Joseph Kony. The LRA leader is still at large in the region near Central African Republic and South Sudan. That is not because the campaign failed, but much like the girls in Nigeria the name Kony is not uttered by many Americans.

The hype cycle of the ice bucket challenge will soon end. The thing that drew people in was the fun in getting to force three people to take part in the challenge. This multiplier makes it well worth the momentary freezing feeling. ALS gets mentioned in videos and coverage in media rises with the virality of the campaign. That soon will wane and people will go back to not thinking about a disease that will mostly likely never impact their lives.

The hope is that the massive influx of money to the ALS Association will support its work for the years to come. They will try to convert the new donors, but the majority will never give again to ALS. Thus is the reality of fundraising. What will be important is how the money is spent.

Donating as Investing

“Under the leadership of our Board of Trustees, we are putting a decision-making process in place to address how this money will be spent. This is isn’t a matter of spending these dollars quickly—it’s a matter of investing these dollars prudently to achieve maximum impact in our quest to help people living with the disease and those yet to be diagnosed,” said Barbara Newhouse, President and CEO of The ALS Association in a press release yesterday.

Putting money into a charity is making an investment in it. The returns I get from the investment are the good feelings of having made the donation and the support for an entity that will have a positive impact on a person or a group of people. Just because I do not make money from a donation does not mean I should treat it in the same manner with which I spend and invest the rest of my money.

Imagine a stock market challenge where you had to either invest $100 in a stock because everyone else is doing it. Would you follow through? I suspect many more people would ask questions, invest elsewhere or not participate. That is what the Ice Bucket Challenge feels like to me. I want the money that I put into a charitable cause to be a prudent investment.

When it comes to the ALS Association, I am not very certain that is the case. I know very little about the state of ALS research. As best I can tell, little progress has been made in terms of slowing down the progress of ALS once a person has it. That may be due to the fact that not enough funding is going into research and development for new treatments. It also might be because we do not have the present scientific capacity to achieve a breakthrough on ALS treatment. There are countless possibilities, but all converge on my not knowing if my $100 is a good investment.

What I do know is that giving to disease specific charities is not an optimal decision. As Felix Salmon argued in Slate, money for health should probably be coordinated so that it is invested effectively.

fundamental medical research should be coordinated sensibly, on a national level, by the NIH, or even at a global level. Having a grab-bag of disease-specific charities competing against each other for research talent is extremely unlikely to result in an optimal allocation of medical resources.

An infographic from VOX compared the amount of money raised for specific diseases verses the number of people killed by the disease. It is no surprise that breast cancer raised roughly five times more money than heart disease, despite killing less than 1/10th the number of people each year. Comparing the number of people who die each year is not the best way of comparing diseases, but it gives one look into the burden. What it does illustrate is that money goes to issues based on popularity, not need or efficacy of investment.

Credit: Vox

On the other hand, there are examples where I know my $100 will have greater impact. GiveWell researches charities to determine whether their programs have a high impact on the people served. It sets a pretty high bar for recommendations as compared to other charity raters. Charity Navigator, GuideStar and other charity rating websites use formulas that depend on number of board members, public tax forms and listed program info to make recommendations. Impacts are starting to be a part of their measures, but organizations need to only publish impact reports. No work is done to determine if the reports are accurate or if the impacts are significant and cost-effective.

One important wrinkle in GiveWell is that it makes recommendations based in part on organizational need. When GiveWell decided to stop recommending the Against Malaria Foundation as a top charity it was because of the amount of money the organization had raised. Right now, only three charities are listed as “evidence-backed, thoroughly vetted, underfunded organizations” by GiveWell. They are GiveDirectly, the Schistosomiasis Control Initiative, and Deworm the World Initiative (led by Evidence Action). There are questions to be asked about what constitutes impact and whether the methods used by GiveWell are the best way to determine giving. Despite having such concerns, this is the closest I can get to knowing that my money will be invested well.

Clever Innovations

The popularity of people sharing videos of doing the challenge to raise awareness for ALS has led to some interesting innovations. From Patrick Stewart writing a check and drinking out of a highball glass to Orlando Jones pouring bullet shells on his head, the challenge has garnered its fair share of commentary and tweaks. ALS continues to be the dominant force behind the challenge, but it was not originally about a specific disease. The challenge was about giving to charity until friends inspired by former Boston College baseball player Pete Frates. They successfully galvanized their networks, starting largely in the Boston area, to participate, ultimately leading the campaign to spread beyond the US.

A notable innovation comes from India. One woman was inspired to come up with the rice bucket challenge. It is rather simple, take a bucket of rice and give it to someone in need. The Hindu, a national newspaper in India, reports that people are starting to take up the challenge started by Manju Latha Kalanidhi of the city of Hyderabad.

Where Will I Donate?

My $100 went to Evidence Action. I picked them for two reasons. First, I know my money will have high impact. Second, another part of its programming is chlorine water dispensers to treat water for drinking and cooking. Given the fact that the challenge has caused me to think so much about water access, I wanted to make an effective donation towards clean water. Since I believe that untied giving allows organizations to spend my money in a way that is most effective, I did not specify where my $100 should be spent by Evidence Action.

About Author

Tom Murphy is a New Hampshire-based reporter for Humanosphere. Before joining Humanosphere, Tom founded and edited the aid blog A View From the Cave. His work has appeared in Foreign Policy, the Huffington Post, the Guardian, GlobalPost and Christian Science Monitor. He tweets at @viewfromthecave. Contact him at tmurphy[at]humanosphere.org.

I think the campaign is a huge success for what it wanted to accomplish -awareness
and raising money. It’s possible that, like me, you knew even less about ALS before the fad. Whether we should all compare the effect our dollars will have at alternate organizations or consider what happens when the fad ends -many people do not (and aren’t those choosing to give to other orgs still giving as a result of the challenge?). The ice bucket challenge is a brief fundraising campaign – a successful one.

Daisy

cool. I wish you donated a penny to me everytime you said $100. You’re missing the whole point of the challenge. First, ice was chosen for a reason. The initial numb feeling you get when the ice water first hits you is supposed to mirror what sufferers of ALS feel, as it is a nerve disorder. Secondly, this did exactly what it set out to do- raise awareness and money for a debilitating disease of which there is no cure. If it’s truly about not wasting clean water than you could save some old bathwater, put it in the freezer over night, and dump it over your head the next day. I not only clearly disagree with your message but also your failure to properly research the subject and lay out a proper argument. Anybody can go plagiarize a pie chart. This article has nothing at all to do with whether or not a free American with disposable income chooses to donate to ALS or not. Really all it does in an incoherent blob is talk about your $100. To say that you will not support a cause just because the odds are low that you or somebody you know will be affected by it is very narrow minded and selfish.

BlondeAmbition

@Daisy: I challenge you to ask 10 random people who participated in this initiative to tell you three things about ALS. As successful as this was as a fundraiser, it did little to provide statistics or other information about the disease, its causes, its detection, or its prevention.

Todd

What a liberal joke!!

Christine Gibson

Even if you don’t care about curing diseases you’re unlikely to get yourself, the ALSA does a great deal more than just fund research. It also helps people with the disease and their families by supplying equipment and services and coordinating care. ALS is a devastating disease, and families have to scramble to make their homes livable for a patient who develops a new disability every day–someone who first cannot walk, then cannot stand, then cannot swallow or sit up on the toilet or breathe.

i don’t understand why you must relate water shortages in africa to wasting water in north america. how are those two things related? if i waste water in canada, does that mean that i deprived someone in Mali of water? NO, IT DOESN’T! we do not share water sources! you want to complain about water shortages in africa, go blame local governments for failing to set up the proper infrastructure needed to deliver water efficiently to its citizens…don’t blame north americans who are wasting water, THEIR water btw, water that they paid for.

Bob

you know what i get out of this? you need to take that $100 bill you got there and take it off of its fucking pedestal you f***head. in 10 years are you going to remember that you donated 100 to ALS research. will it matter that your super special 2014 hundred dollars is going to be used to fund ALS research vs something else. will your 100 dollars ACTUALLY make a difference? probably fuckin not. but nobodies 100 dollars means anything unless EVERYBODY donates. you make me sick

Bob

I went back to your pie chart and thought for a second and guess what. Heart disease isnt the top killer just because we dont put money into it. Its the highest killer because we humans are fucking stupid and eat like shit and dont exercise and then all of the sudden it shows up in our genetic pool and all of the sudden it runs in the family. NOT BECAUSE WE DONT FUND RESEARCH YOUR FUCKING ASSHOLE

Bob

haha i just went back to the pie chart again and realized that the top killers are ALL caused by the shit and poison that we put into our bodies using our own hands. Research and donations will change nothing

Kari-Anne Tobin-Lewandowski

I agree with you whole heartedly. I also thought of 3rd world countries who have barely enough clean uninfected water to even survive and yet we throw it away like garbage. I’m assuming that some of it somehow makes it back into our aquifer to be recycled and used again, but that’s not the point. Sure, it was funny and all to see so many people dumping ice water on their heads. What got me was the fireman I saw who actually dumped 4000 gallons on his head from his firetruck! Are you kidding me? What a waste. How disrespectful. I’m not political in any way, I’m just a normal person who thinks that if they want to raise awareness for this disease that only takes a toll on 30000 people at any given time, they could have come up with a less wasteful idea. Shave your head! Or paint your fingernails black! I’m so embarrassed by this that I am just glad that these other countries don’t have Internet to see how we throw away delicious buckets of ice water without any concern. I know it’s for a good cause, but there are way more important uses for that money. Ones that affect MORE than just 30,000 cases. Cancer? Parkinson’s? MS? Or how about sending clean water to dying villagers. Sounds fitting. I get it, but I just don’t get it.

MontanaMuleGal

The ALS Ice Bucket Challenge is a brilliant
fund-raising tactic.

However, everyone in the US
should be aware that people diagnosed with ALS may indeed really have tertiary Lyme
disease plus co-infections.

ALS has no cure. Tertiary Lyme disease may be aggressively treated with an
antibiotic regimen.

With 300,000 new cases per year, Lyme disease is almost twice as common as
breast cancer and six times more common than HIV/AIDS.

All people with diagnoses of “autoimmune” diseases should be checked
for Lyme by a Lyme Literate MD: ALS, multiple sclerosis, rheumatoid arthritis,
fibromyalgia, chronic fatigue, Lupus, Parkinsons, Alzheimers… etc.

Meanwhile,this whole ice bucket thing almost ignores the fact that many people solve als themselves, by changing lifestyle and using natural and holistic approaches. Check out this film in production that will include interviews with many such people. http://www.healingals.org

D

Sanctimonious garbage.

Jessica Keralis

Wow, Tom – I’m impressed at the number of completely asinine and rude comments you’ve gotten here. I’ve seen mixed reactions to the Ice Bucket Challenge, and though I don’t agree with most of the objections, I have no reason not to support someone who gave money to another organization instead. I don’t think the argument that it wastes water is really valid, as you could make the same case against having a swimming pool or using a dishwasher. As some people have noted (albeit rudely), saving water in the US doesn’t translate to people in South Sudan or Iraq having more clean water. Water politics is complicated and an issue unto itself.

I would also argue that while things like heart disease, HIV/AIDS, and diabetes do kill a lot more people, we understand these diseases much better and know that they are directly preventable by modifying behaviors. ALS needs research because we don’t know what causes it or even how to treat it, whereas all of the other conditions that you pointed out have effective treatments. At this point, funding research into ALS is the ONLY way to combat the disease, and it could lead to a better understanding of environmental factors of disease and the nervous system in general.

I am a bit biased, as I worked on an ALS public health project for two years before going abroad, but I am glad there has been discussion about the issue in the blogosphere. If nothing else, hopefully other worthy organizations can learn from the success of this fundraiser and apply the lessons to future campaigns.

Thanks for the reply Jessica and your thoughtful points. I am going to use your points as a jumping off for a more general reply, so know that much of this is directed to everyone that has read and commented on this piece.

I definitely did not aim to say that dumping water was a complete waste. The amount of money raised proves that it is not the case. Still, I cannot help but think about the importance of water relative to my own experiences and reporting. You are 100% right that there are way more wasteful things we do with water. In the end, that is what matters less for me than actual impact of my dollars spent.

But all of this centers around me. The exercise here was to try to explain why I did what I did. It is these points of view and motivations that impact how we view the campaign and act. My choice is not better than others, it was what is best for me. I think a few people understood that (yourself included), but maybe I did not convey that clearly enough.

Finally, at no point did I minimize the terrible disease that is ALS. I am fortunate that it is something that has not affected my family and friends. Research should be devoted to understanding what is happening and how to stop its progress, prevent it altogether and cure it. I do not discourage people from giving to the ALSA or other reputable causes that will contribute to ending the suffering caused by ALS.

My final point is this. Everyone that has participated in the ice bucket challenge has had the opportunity to make their case for doing so and donating to the ALSA. I applaud those people and hope to learn from them. My hope is that having a constructive and calm dialog can flow in two directions.

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